SynGAP10 weekly 10 minute updates on SYNGAP1
Business:Non-Profit
CHECK OUT THIS CONFERENCE: https://syngap.fund/treat
PROBABLY GENETIC IS WORKING!
- Assessment: syngap.fund/maybe - https://symptom-checker.probablygenetic.com/syngap/
- Testing: syngap.fund/ambit - https://www.ambitcare.com/registration-syngap-research-fund
- Webinar: https://syngap.fund/PG - Thursday, June 9th at 9am PT/Noon ET/5pmBST
DON’T MISS OUR NEWSLETTER
- June 2022 https://mailchi.mp/syngapresearchfund.org/june22
- Sign up https://www.syngapresearchfund.org/families/newsletters
- Please make sure we are not going to Spam
#FATHERHOOD & RARE
- Sign up for the EF Panel: https://bit.ly/efmen - https://us06web.zoom.us/webinar/register/WN_Iv8d06ffT_uDbRDXAAWKOg
- SFN Dad To Dad Podcast: https://www.spreaker.com/user/specialfathers/dad-to-dad-204-mike-graglia
LINKS FORM EF #PIPELINECONFERENCE 2022
- Agenda: https://www.epilepsy.com/research-funding/pipeline-conference
- Kayak study for #SCN8A: https://kayakstudy.com/
- #Prax562: https://www.globenewswire.com/news-release/2022/01/18/2368578/0/en/Praxis-Precision-Medicines-Announces-Publication-of-Preclinical-Data-Highlighting-Differentiated-and-Potent-Antiepileptic-Activity-of-PRAX-562.html
- $PRAX https://seekingalpha.com/news/3845864-prax-stock-on-watch-as-lead-asset-fails-in-depression-trial
- Engrail: https://www.businesswire.com/news/home/20220607005544/en/Engrail-Therapeutics-Announces-Positive-Results-of-ENX-101-Phase-1b-Clinical-Study-and-Prepares-for-Initiation-of-ENACT-Phase-2-Trial-in-Focal-Epilepsy
FUNDRAISERS
- MDBR: Join us and secure $30k matching funds https://syngap.fund/SRFMDBR22
- MICE: Help us Make 2! https://syngap.fund/2mice
EVENTS
June 11 in Philly - Support our team https://syngap.fund/srfmdbr22
June 25 in DFW - Join us for a family meeting and hear from Dr. Perry. Link soon.
September 12-14 in San Diego - #GlobalGenes Meeting. Link soon.
October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala
October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap
November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree
December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat
EVERYONE SHOULD SIGN UP FOR CIITIZEN ASAP: https://www.ciitizen.com/syngap1/
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast
Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818
Episode 63 of #Syngap10 - June 7, 2022
#F78A1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration #EpilepsyFoundation #Engrail #Praxis #Neurocrine #ProbablyGenetic #AmbitHealthcare
SRF LT Webinar, MDBR, Therapies, Learning at Conferences. #S10e141
Who will fight for our kids when we aren’t there? SRF and your crew. #S10e140
SRF is a “Get-to…” not a “Have-to..” Do something & Go big. #S10e139
Grateful and grieving. SRF is growing with our community, all 1,400 of us! #S10e138
Stoke Praxis Longboard, CHOP & Adult Studies, Hope4theCure, Sprint4Syngap, & Social Matters #S10e137
SYNGAP1 Ciitizen Paper is out! UCB Survey. UCSF is discovering SYNGAP. #Sprint4SYNGAP 2024 is on! Fitter at the WH. #S10e136
#RareOnTheHill and #SRFboard in DC were epic. It’s going to be a great, year, get some #RareBrewCoffee! #S10e135
A very important questionnaire. Repurposing update & ethics. Grant shaping in progress! #S10e134
What is this SYNGAP1 illness / disease / syndrome / NDD / DEE / MRD5 / NSID actually called? #S10e133
Congratulations to Encoded, Jaguar, Aparito and what will we count? How will we know these therapies are working? #S10e132
SYNGAP1 is complex, we need to partner with our clinicians to improve care & get ready for repurposing. #S10e131
2024 is off to a GREAT start. Time to get clinical, let’s get all these studies oversubscribed and make sure industry knows we are ready. #S10e130
Happy New Year! Happy 10th Birthday Tony! Congrats #Longboard. Publication update. Good feedback and frustrating stories. #S10e129
Over the break: Studies to do, Research & Press to read, Funds to raise, Resources to update, Resolve to Volunteer #S10e128
Ciitizen continues to evolve, but essential aspects remain: SYNGAP1 as a lead program & a strong team. +Support Harper #JuggleIsReal - #S10e127
A patient dosed, new site, audited financials, conference reviews, EOY giving, two studies to join! - #S10e126
ICD-11, SYNGAP1 Adult Paper & Study, AES, #SyngapConf, Frazier Eye Tracking Study - #S10e125
Giving Tuesday, #SyngapConf, #FasterCures & Happy Thanksgiving - #S10e123
The more we own our EEGs, the sooner we get a biomarker. Simple. And remember to get Dinner tickets for the conference! - #S10e123
Study Invitation - Everyone with a laptop can help us make an easy at home validated measure to de risk clinical trials. Sign up now for this #SRFunded effort - #S10e122 #SRFFrazier
Create your
podcast in
minutes
It is Free
The Commercial Edge: Unleash the Power of People
The emPOWERed Half Hour
Social Dallas Podcast
Advocacy Scoop Podcast
Change Church Podcast
The Biz of Nonprofit Consultants
Nonprofits Are Messy: Lessons in Leadership | Fundraising | Board Development | Communications